I am a mom and M.D. with Celiac Disease working to increase awareness and share information about gluten-related disorders.

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My “Unlucky” Seven

Since going gluten free 3 years ago I have made my share of mistakes leading to “glutenings.” Most of them were in my first 6 months post-diagnosis. I am sharing my list in hopes that I may prevent others from getting sick like I did. I am also sharing so that friends and family members of Celiacs may understand why their Celiac loved one may seem to be “paranoid” from time to time.

1. Shampoo: I had a bad case of brassy highlights and bought a “blueing” shampoo to use a few times a week to neutralize the brassiness. Lo and behold, I began to feel ill, and one morning, as I read the ingredients while in the shower, I realized that my shampoo contained hydrolyzed wheat protein. There is a lot of controversy about whether or not gluten can be absorbed through the skin, but in this case, I believe that a little bit of shampoo was probably getting into my mouth while I was rinsing my hair. I stopped using the shampoo and my symptoms went away. Problem solved. My lesson learned was to always read the ingredients in hair products before buying and using them.

2. Playdough: Yes, this seems obvious, but I honestly thought that if I washed my hands carefully after playing with it, that I would be safe. I had figured that as long as I didn’t actually eat the Playdough that I would be fine. I was totally wrong. If you’re a Celiac with kids, you cannot touch Playdough with a ten foot pole! Trust me.

3. Eating gluten free pizza at a pizza parlor that makes regular pizza: Looking back, it seems obvious that this was a bad idea, but I had confirmed with the kitchen staff ahead of time that there were no gluten ingredients, that the gluten free pizza would be made on a separate surface, that the flour used to roll out my pizza was gluten free, etc. I learned a lesson in cross-contamination.

4. Hand sanitizer: I was traveling for a work conference, through lots of dirty airports, subways, etc. in the middle of winter, so I used a lot of hand sanitizer. Unfortunately, I soon discovered that it had wheat amino acids in it. Like the shampoo incident, I don’t believe that I absorbed the wheat protein through my skin, but I used the sanitizer many times before eating, and thus, probably ingested trace amounts that built up in my system and made me ill.

5. Soup at an airport café: As most celiacs know, soups are usually unsafe. I was at an Au Bon Pain at a major airport (yes, a very poor choice of café for a Celiac) and was pregnant and starving. The soup was labeled as a gluten free white bean soup and there were ingredients listed, which were all “safe.” But it wasn’t actually safe at all. I am pretty sure that the ladle must have been contaminated by being dipped in some of the other soups, and then put back into the gluten free one. That was the last bowl of soup that I ever ate….

6. Making Christmas cookies: This happened shortly after the Playdough incident, but I was still in denial that I could get sick just from touching/handling wheat flour. My kids and I made dozens and dozens of cut-out Christmas cookies using regular flour. I washed my hands numerous times, picked dough out from underneath my fingernails, and obviously didn’t eat any of the cookies, but still got majorly glutened. Hence, the gluten free cut-out cookie recipe that I shared with you last week!

7. Trusting a “no gluten ingredients” label: This was my most recent glutening. We do not live near a Trader Joe’s but will often stop at one when traveling. I have always avoided any of their products that have the disclaimer that they are made on “shared equipment” with wheat because I know I am sensitive and react to traces of gluten. We bought and prepared a basic spaghetti sauce that was marked as “no gluten ingredients” and did not have the shared equipment warning on it. We ate it with rice pasta for dinner and I got sick (no one else in my family did). I contacted Trader Joe’s via email and they did write back that the sauce was made on shared equipment. I have learned to never make any assumptions about processed foods.

As time has passed I have learned how careful I really need to be to prevent getting sick. I wish that I knew at diagnosis what I know now, that being “gluten free” is not as simple as it sounds and to not take risks with the diet. For those of us with Celiac Disease, eating gluten free is not trendy or a “fad,” it is the difference between sickness and health. As the actress Jennifer Esposito, a Celiac, recently stated, “This disease is no joke.” I wholeheartedly agree.

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4 thoughts on “My “Unlucky” Seven”

I can’t tell you how grateful I am for your posts. I’ve been reading through them all over the last few days since I found you, and your facebook entries. And up until I read this post I was a little uncertain about shampoos, lotions, etc. But this is what connected the dots for me. Thank you!

Three days ago after a morning of gardening I came in and washed my hair and after lunch developed the gut issues that I’ve been experiencing intermittently since my diagnosis of Dermatitis Herpetiformis on May 16th … just a month ago. Along with the gut pain I was again getting an eruption of lesions on my upper back ….. oh no ……… which had all started to lessen in intensity and appearance since I’ve been using the elimination diet and have not allowed any gluten in my diet whatsoever. Oh the despair you feel when symptoms start to reappear …. I keep a food diary and note my symptoms in it too. I was baffled, I’m eating a very clean diet.

I read this post this morning … went to look at my shampoo bottle … third ingredient hydrolyzed wheat protein. I don’t need any other convincing … I’ll be purging anything from my bathroom now that has my poison in it.

Hi Gill,
There really is a huge learning curve at first (but it sounds like you are far ahead of most of us). I did not believe that I could get ill from touching products with wheat protein until it happened to me, as most of the Celiac info from reputable sources stated that we only get ill if gluten is ingested. And then I learned the hard way.
I received a lovely Crabtree and Evelyn lotion gift set for Christmas last year which I had to promptly regift as all of the products contained wheat. The other place which I just found wheat in was cooking spray which I bought at Walmart during a vacation…I now read labels on everything.
I hope that you are feeling well and that your D.H. resolves quickly. Thank you for reading!
Jess

I had been wondering myself if shampoo with wheat in it would be a problem and now I know. I am hyper sensitive when it comes to my celiac (I can barely watch a field of wheat without getting ill). Gluten contamination is a rising problem here in Denmark since it became “trendy” to eat gluten free. Many bakers advertise they have gluten free bread (and it might be gluten free enough for those trend-people who are not ill) because they bake it with gluten free flour before the regular bread and my latest gluten-adventure was a bag of organic millet flakes labelled ‘gluten free’ but most certainly was not (it must have been flaked in a factory where they processed wheat as well). I was sick for an entire month and because of weakened immune system got a skin disease on top of it – swell.

It is truly a jungle out there when you no longer can trust the gluten free label or people claiming their products are gluten free. About a week ago I found a nice page about chocolate where a guy had phoned or e-mailed several companies that produced chocolate to hear if their products were gluten free – pretty cool and great initiative. I love Kinder Surprise (my grandmother used to buy those for me when I was tiny ^_^) and was happy to see that Ferrero said they were gluten free. Have bought a box eaten two and now ponders because I have remembered that Ferrero produces Roches too and they contain a thin wafer shell made from wheat… So once again, even though producers claim their products are gluten free they apparently have no idea what they are talking about and they put a lot of people’s health at risk.

I want a little chemical set so I can test my own food for traces of gluten – it is the only solution ^_^

Hi Lea,
It is nice to hear from you and I really appreciate that you’ve shared your experiences. We have a ton of problems with gluten cross-contamination here in the States too. I cannot tell you how many restaurants I have walked out of after talking to the waiters and management and finding out that their “gluten free” menu items are not really gluten free (I.e. Prepared on a shared surface with wheat-containing items or fried in a shared fryer with breaded items). Same with bakeries too.
Your mention of the Kinder surprise made me think of my friend Arno who was a German exchange student at my high school who I befriended. His mom would send care packages with treats that were not available in the US at the time, like Kinder surprises and Nutella. I am thankful that I was able to freely eat back then!
Please feel free to comment or email at any time, thepatientceliac@gmail.com. I had been on a bit of a hiatus from this page but I am back.
Jess